The #PaintItPurple hashtag is linked with the fact that #1in10 women in the UK have PCOS (polycystic ovary syndrome). To show awareness of this fact and to act as a talking point, we are being encouraged by national PCOS charity Verity to paint just one fingernail purple.
So at this stage you would (if you know me well) expect a photo of my hands, fingernails beautifully manicured and painted with one purple nail and the other nails painted with another funky colour. So why have I used Verity’s – albeit lovely – diagram instead?
Well… a couple of weeks ago I blitzed my office and bedroom as the disorganised piles of clutter had annoyed me into action. In my whirl of tidiness I had in fact decided to throw away my half-empty, dried-up bottle of purple nail varnish! On Monday, as I suddenly realised the significance of my actions, I frantically added a bottle of purple nail varnish to my Click n Collect order… only to find it was out of stock. Ah ok I thought, I can buy a berry-coloured varnish and put a thin layer of blue varnish over the top of it. Problem solved. However, when I went to collect my order, the blue varnish was out of stock and had been substituted! Hey ho #NotPurple
I find it fascinating that for a syndrome affecting 10% of the females in the UK, not to mention their friends and families too, that very few people have actually heard of PCOS. Out of the people that have heard of PCOS, most know only a few details about it and presume it is ‘just a fertility thing’. If you read yesterday’s blog, you would be aware that PCOS has many more signs and symptoms other than infertility.
So how does it feel to have a common hormone / metabolic and infertility syndrome that not many people know about and therefore struggle to understand the impact it has?
My current PhD research at Huddersfield University is a two-part study, with the first part exploring the impact of living day-to-day with the syndrome on physical, emotional, and social levels. Every one of the ten women who I interviewed described some level of distress caused by their symptoms and the way they themselves and others reacted to them.
Physical – many of the physical symptoms of PCOS are visible if left untreated. These include acne, weight gain, excess facial & body hair, and male-pattern baldness. Each one of these symptoms on its own is hard to deal with – treatments are not always available, and those that are available often aren’t very effective. Some treatments, for example laser hair removal, are rarely available on the NHS and are expensive, painful, and time consuming when done privately. The treatments offered for acne will depend on its severity, and can include over-the-counter treatments (creams, gels, and lotions), or prescription creams, gels, and tablets (eg antibiotics). Androgenetic alopecia (male-pattern baldness) is a very distressing condition which can be hard to treat, involving long-term remedies which can take up to six months to show any signs of effectiveness.
Emotional & Social – what if you wanted to have children but struggled to conceive or carry to full term? How would that affect your relationships? Your sense of purpose in life? When you started growing a full male-pattern beard, how would you react and feel when people stared at your chin while talking to you? How would you react to a child in a shopping queue shouting at the top of their voice “that woman is growing a beard”? How would you feel about your sense of self-worth if family repeatedly commented on your ‘weird bald patch’? Finally how would you feel when total strangers on the street or on social media judged your overweight or obesity and told you to ‘just eat less and move more’ when you know how hard you try to eat healthily and stay active?! Each situation can be soul-destroying. Imagine having to deal with several of those situations on a daily basis for years on end with no hope of a change?
During September’s PCOS Awareness month please take a few moments to learn about PCOS and the implications it has for #1in10 women. Pause for a minute before staring or saying unsolicited comments. Think. Care. Empathise. Listen. You will help to make a tough situation more bearable.
It’s not all doom and gloom though. There IS hope. There are good times. Research IS improving awareness and treatments. Please continue to follow this daily blog as I share on different aspects of living with PCOS.
See you tomorrow for a discussion on diagnosis.